Patient Leaders

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Patient Leaders

Herts, Royaume UniHerts, Royaume Uni
Type d'organisation: 
à but lucratif
Phase du projet:
$10,000 - $50,000
Sommaire du Projet
Lancement Important

Bref récapitulatif : Aidez-nous à présenter cette solution ! Fournissez une explication en seulement 3 ou 4 phrases.

Formation et soutien aux patients et aux bénéficiaires de services afin qu'ils puissent initier le changement en matière de santé et de soins de santé.

About Project

Problème : Quel problème ce projet essaie-t-il d'adresser ?

Health services face unprecedented challenges. But patients are seen as the 'problem' and are an untapped resource. Professionals (clinical/managerial) fail to recognise patients as leaders who can co-produce solutions & current approaches to engaging patients and the public fail to achieve significant impact. Few services are organised, run by, or influenced by patients or users. Current approaches to building the capacity of patient representatives, activists and community leaders are ad-hoc & under-funded. Patients feel isolated & disempowered. What is on offer does not meet practical or emotional & psychological needs. Patient leaders lack the knowledge, skills and confidence to build dialogue, create trusting relationships, influence power, enhance accountability & improve services.

Solution: Quelle est la solution proposée? S.v.p soyez précis!

The Centre for Patient Leaders will: (a) provide learning and support for patient leaders (those seeking to transform services and those leading health improvement in the community) b) develop an online network and community of practice for emerging patient leaders (c) be a pool of talented and high quality patient leaders, from which health organisations can draw to input into health improvement activities (d) be a social movement for change that challenges and alters the fundamental power structures of health care (e) Enable 'graduates' from The Centre to become accredited Coaches and Facilitators. They can then earn an income through The Centre that fits in with their lifestyle and health needs. They will also become role models for the empowered, creative, proactive and facilitative approach to change that we are hoping to promote within their local communities. For more information, see: 'The Rise of the Patient Leader' at
Impact: How does it Work

Exemple : Faites nous découvrir comment cette solution fait la différence en utilisant un ou plusieurs exemples concrets ; en incluant aussi ses activités principales.

We run learning programmes, action learning sets, telephone coaching &(in the future) online learning programmes for patient leaders. Our major offer 'the effective patient leader' is a five session learning programme consisting of action learning, skills-based sessions & telephone coaching. We have run seven such independently evaluated courses that achieved significant outcomes (for individuals and organisations) and have about 80 alumni. We develop the personal management and leadership capabilities (including resiliency, self-efficacy, motivation, confidence) that allow patient leaders to lead change & practice these qualities on an ongoing project/initiative. We focus on supporting them to to take control of their lives and futures. Participants have included: - community leaders who successfully developed community projects, such as nutrition clubs for people from black/ethnic minorities; setting up drop in centres for elderly people; projects on behalf of people with HIV; mental health service user forums, etc - patient representatives with increased confidence to challenge decision making and push for service change (e.g. a Hospital Governor who was able to input into quality issues; an activist who developed a project on diabetes self-help that received local authority funding; - individuals with particular conditions progressing by taking up opportunities in fora, project, patient organisations etc In summary: We offer Patient Leaders support to make a difference through (1) learning (2) connection to a community of practice (3) ongoing support

Marché : Qui d'autre adresse les problèmes mentionnés ici ? Comment ce projet diffère-t-il de ces approches ?

Few organisations provide 'training' for patient representatives and even fewer have identified 'patients as leaders'. Where training is provided for patient representatives, this is often based solely on the needs of the institution and is didactic and depends largely on providing people with knowledge of the 'system' rather than the skills necessary to negotiate their way around or deal with power. Our competitors largely focus on building the capacity of organisations and health professionals - not the capacity of patient leaders themselves. Or they focus on the 'techniques' of engagement and do little to shift cultures and systems. We are committed to empowering a community of practitioners (patients) who will co-create the future success of the Centre for Patient Leadership

Histoire de votre fondation

My mental health problems were my major personal crisis. When I recovered, I wanted to change things for the better for others. I became a patient representative and policy advocate. But I received no learning, support or further opportunities. Meanwhile, health professionals with whom I worked received continual professional development and organisational support. This venture provides the learning and support that I needed, but never got. (David Gilbert) I developed severe RA in my early 20’s. I got little support from the Health Services. I was seen not as a person living with Arthritis but as a set of symptoms and physical ailments to be treated and ‘cured’. When I was treated the system seemed geared to the needs of the medical/health professionals. Rarely was I asked about what I needed or wanted. I realised that if I wanted things to change then I needed to go on my own personal journey and find others who I could work with who had a similar experience to me. Mark Doughty
A propos de vous
InHealth Associates
A propos de vous




A propos de votre organisation

InHealth Associates


, BNE, Herts

Pays dans lesquels ce projet crée un impact social


Depuis combien de temps votre organisation opère-t-elle ?

1‐5 années

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Depuis combien de temps le projet existe-t-il ?

En place depuis 1 à 5 ans

Parmi les propositions suivantes, laquelle décrit le mieux les obstacles que votre projet tente de surmonter ? Jusqu'à deux réponses possibles

Accessibilité, Coût.

Impact social
Décrivez le but de votre initiative, en insistant sur les résultats que vous souhaitez obtenir

We want to:
-enable individuals to develop their confidence and self belief and develop the skills to make effective changes in their own lives and develop the skills of self leadership.
- ensure that patient leaders (those seeking to transform the system or their community's well-being) receive the knowledge, skills and behaviours necessary to influence change
- change the balance of power in health and healthcare so that patients and professionals can better share decisions
- provide a high quality resource (patient leaders) able to support constructive improvements in health and healthcare
- ensure that health and healthcare improvement is sustained in the current political and economic climate
- Create role models and mentors that inspire others to make changes in their lives

Jusqu'à ce jour, quels résultats a obtenu votre projet ?

Independent evaluation and outcomes yielded are at several levels:
- better understanding of systems, increased abilities to cope with professionals and power issues, enhanced ability to ask powerful questions that can influence change.
- participants report significant improvements in health and well-being, increase in confidence, self-esteem and ability to influence change, decision making and in their own projects
- organisations report that participants display improved capabilities in the organisational environment
- there are reports of improved decision making (transparency, accountability) and changes in services
- User involvement has increased and cultural change taken place in organisations to which individuals belong
- examples include: participants funded for diabetes peer-education project; one invited onto Ministerial Advisory Group for mental health; one set up older people drop-in centre; another now on national task force for commissioning sickle-cell services

Quelles sont vos prévisions en termes d'impact au cours des cinq prochaines années ?

We would like to be able to have delivered at least 100 learning programmes across the UK and to have delivered half that amount in other countries; our learning network would be international and have delivered online learning programmes and resources to several hundred patient and community leader around the world; from within our network, we would have trained up at least 50 leaders able to deliver their own programmes; our network of patient leaders would have contributed to at least 200 local and national involvement projects around the world and will have developed a community of practitioners who have a positive impact on the health within their communities and how it is being organised and managed.

Quels sont les obstacles qui risquent de freiner votre projet ? Comment pensez-vous les surmonter ?

The capacity to deliver a high quality learning product at scale is the most important factor alongside cost and access; We need to continue to provide relevant, high quality learning with a strong value base. Therefore we need to ensure we find the time and resources to spend time on the project. We plan to:
-Develop our networking skills to seek out advice, support and opportunities to find the resources we require
-Seek opportunities to creatively engage with organisations that might benefit from our vision and offer e.g. look to develop strategic partnerships with charities, voluntary organisation where we could add value by developing a tailored patient leadership programme for their members. Therefore look at opportunities to joint fund raise
-Identify private sector partners.

Les meilleures propositions possèdent un programme solide détaillant leurs prévisions pour atteindre et suivre leurs objectifs de croissance. Identifiez vos objectifs à 6 mois pour accroître vos résultats

Develop a strong online presence for the Centre and further develop our curriculum offer and our business model

Définissez les trois tâches principales à accomplir pour atteindre ces objectifs à six mois
Tâche 1

Recruit online development manager or find the support to help us develop the online learning vehicle and web presence

Tâche 2

Develop a marketing strategy and identify target market for beneficiaries (patient leaders) and customers (funders)

Tâche 3

Develop online resources and materials for target market including the Train the Facilitator and Coach/Mentor programmes

Et maintenant, voyez les choses en plus grand ! Identifiez vos objectifs à 12 mois

Develop package of learning offers at scale (UK-wide) that includes face to face and online learning and fund our business model

Définissez les trois tâches principales à accomplir pour atteindre vos objectifs à 12 mois
Tâche 1

Recruit a business manager and have five patient leadership programmes funded and running with five strategic partners

Tâche 2

Train the Facilitators and Coach/Mentor programmes funded and run successfully at least once.

Tâche 3

Successfully be marketing our vision/work in Wales, Scotland and Ireland and be able to match capacity to demand

Quels sont vos différents partenariats ?

We have been funded by a variety of local organisations, such as the CLAHRC in NW London, Croydon Voluntary Action and NHS Hammersmith and Fulham. We are in discussions with the CLAHRC about partnerships. We are also in discussion with several patient and voluntary sector organisations (e.g. Turning Point, National Rheumatoid Arthritis Society, MIND), Leadership Academies and a range of Clinical Commissioning Groups. Together with the Centre for Innovation in Healthcare Management in Leeds University, we are working on a research inquiry into patient leadership and patient entrepreneurs.

Actuellement, votre projet cible-t-il d'autres populations, lieux ou marchés spécifiques ? Si oui, lesquels et pourquoi ?

Our work covers a broad spectrum of Patient Leaders. In turns of customers, we are considering approaching the private sector as funders. We think that Hospital Foundation Trusts and large charities may also be keen to develop their own 'lay' leaders within their specific environments.

We wish to target charitable/voluntary organisations in order to develop strategic partnerships so that we can offer patient leadership programmes tailored to their memberships. With the possibility for then developing accredited facilitators and coaches to ensure that they self manage its future growth.

Quel environnement et quels facteurs organisationnels internes font la réussite de votre projet ?

We need to build infrastructure and develop our marketing potential in order to make a stronger business case for the work amongst health and healthcare organisations.

Our commitment to collaborative working includes giving people who get involved with the Centre the opportunity to guide its development. This co-production approach reflects our belief in empowerment and desire to see equal partnerships in health care between professionals and service users.

We will create the cultures and systems necessary internally to sustain this co-production approach. This includes also working only with trusted high-quality partners (individuals and organisations) committed to our values and ethos.

Expliquez plus en détails les besoins et les offres indiqués ci-dessus ou proposez un type d'aide non mentionné dans la liste

A key learning will be how to push forward collaborative ventures between our work and the private sector in order to create a win/win for both parties that stays true to the underlying values and principles that guide our work.
One of our key offers to be stressed is leveraging participants abilities to deal with complexity and change which comes as part of their daily living with their Health.